Thursday, December 21, 2017

Many of you followed Julie Keon on her blog. Julie just released a revised edition, with new content, of her book What I Would Tell You: One Mother's Adventure with Medical Fragility. The book covers all Julie has learned since her daughter Meredith was born with a severe brain injury 14 years ago. One of the best parts of the book, for me, was the chapter about befriending grief. Julie asked me to write a review, so I did:What I Would Tell You is a candid, riveting account of what happens when you're told your precious newborn will not do any of the things you anticipated. Julie leads you through what to expect: how you might feel, how others might react and most importantly, what you can do to thrive and find meaning.

This book is packed with compassion, practical wisdom and life-affirming insights. It's a must-read for parents, family and friends. Anyone seeking courage and resilience in the face of catastrophic events will benefit from it. What I Would Tell You is an indispensable guide for doctors and nurses and others who work with children with medical fragility. It illuminates the kind of care that empowers and uplifts, and the kind of care that can break down and further traumatize.Congratulations Julie! This book should be on medical school curriculums.

Tuesday, December 19, 2017

Two of Amy Wright's children have Down syndrome— Beau, 12, and Bitty, 7.

In 2016, Amy opened Bitty and Beau's Coffee Shop in Wilmington, North Carolina. Knowing that most adults with intellectual disabilities don't have jobs, she wanted to show what people with the same disabilities as her kids could contribute. The shop now employs 40 staff with disabilities like Down syndrome, autism and cerebral palsy (watch Matt's story in the video above). The shop's tagline: More than a cup of coffee, is followed by messages like 'Changing the way people value other people.' The shop was so successful that a second location is opening in Charleston, South Carolina. All proceeds go to Able To Work USA.

Monday, December 18, 2017

Last month the American Academy of Pediatrics released a policy statement on how children with obesity are stigmatized, and how health professionals can help reduce that stigma when talking about weight.

This month, Holland Bloorview launched an interactive casebook on how to have positive conversations about weight and health with children, including those with disabilities. The book focuses on healthy lifestyles and is written for health professionals across disciplines

It brings together the latest research, video stories from clinicians and families, simulations and resources.

BLOOM interviewed Amy McPherson, a Holland Bloorview scientist who authored the casebook with knowledge translation specialist Christine Provvidenza and post-doctoral fellow Laura Hartman. A multi-disciplinary team also worked on the project and input came from experts across Canada.BLOOM: In what way is weight an issue for children?Amy McPherson: One in three kids in Canada has overweight or obesity. Kids with disabilities are two to three times more likely than their peers to experience this.BLOOM: Why do you say kids ‘have,’ as opposed to, ‘are’ overweight?Amy McPherson: It’s person-first language. We’re trying to get across that obesity is a disease, like diabetes, so something you have and not something you are. This is the language recommended by the Canadian Obesity Network.

BLOOM: What is a casebook?Amy McPherson: A casebook helps bridge the gap between what we know and what we do in health clinics. It combines research evidence, experience and resources in one place and provides practical clinical guidance to heath professionals who work with children.BLOOM: Why is a casebook needed?

Amy McPherson: We know that health-care professionals who work with children report that they don’t feel confident having discussions about weight. They don’t feel like they have the training to bring up these issues. They’re often worried that they’ll ruin a therapeutic relationship they have with a child and family by offending parents and children, or will cause self-esteem issues in the child. That speaks to the weight bias in our society. Why would having a higher weight be any different than having blue eyes? We associate negativity with weight, and so we’re reluctant to mention it.BLOOM: What should professionals know about higher weights?

Amy McPherson: One of the main messages in the book is that obesity is not a personal choice. It’s complex, and affected by many factors. It’s not a case of ‘eat less and exercise more.’ If it was that easy, no one would have obesity. Genetics influence weight, as does sleep and your metabolism and medication. When you lose weight, your body actively fights it.

We encourage professionals to talk about growth and health rather than weight and size. If they are tracking a child’s growth and they see a steep trajectory, that may be an opportunity to step in and talk about the impact of weight on health.BLOOM: What are the key messages you want to get to professionals and families?

Amy McPherson: One is that before talking about weight-related topics with a child, ask for permission. First, make sure you’re in a private environment and the child feels comfortable. Ideally they will know the professional. If the child doesn’t want to talk about it, say ‘Okay, we’ll revisit it next time’ and ‘It’s always okay to come back and talk to me, or someone else, about it.’ We need to build rapport with families who might be sensitive about it.

BLOOM: What are other suggestions in the book?

Amy McPherson: To recognize the strengths of children and families and what they’re doing well. Almost anything can be made into a success, and can be used with the child and parents to motivate and engage them. Perhaps they made Tuesday a pop-free day. That’s awesome. Focus on solutions. Maybe they turned off the TV earlier than usual and played a game outside. Find where their strengths are.

BLOOM: How is the book different from reading a research paper?

Amy McPherson: We wanted to make it really practical so it could be used in everyday practice. To create the content, we held two workshops with researchers, clinicians, students, parents and youth. We wanted to make sure that people with different learning styles could benefit. So we include diagrams and videos. We have evidence-based research summaries in there but we break everything down. For example, we have six sentence starters for clinicians who don’t know how to bring up the topic. We have four simulations to spark conversation on what works and what doesn't. There’s a one-pager clinicians may want to stick on the wall.BLOOM: I’m wondering if one of the reasons health workers don’t want to address weight is that there isn’t an easy answer in terms of treatment.

Amy McPherson: Weight management in all children has a low success rate. We haven’t worked out exactly how to do it with typically developing children. With children with disabilities, there are extra complexities. We need more research to offer recommendations on weight management. But if we can get professionals talking about being active and eating well for your health, and not make it about weight and a number on the scale, that may have benefits. We want to give the message that the whole family can get involved in moving more and feeling good about their bodies.BLOOM: What are next steps?Amy McPherson: We’ve applied for Centre for Leadership funding at Holland Bloorview to do an implementation study. We’d like to work with a group of clinicians and trainees here to create a curriculum and a road map of ‘this is what you do to get this into your clinic.’ We would identify the gems that are immediately useful. We’d also like to target a number of clinics across Canada to look at the impact of using the casebook and whether it’s changing behaviour.

Friday, December 15, 2017

We just finished our first six-week narrative medicine group for parents. The group brought together nine parents for 90 minutes each week to work with BLOOM editor Louise Kinross and Shelley Wall, a biomedical illustrator and assistant professor at the University of Toronto.

Each session we addressed a theme related to the emotions of raising a child with disabilities. Participants would read excerpts from a graphic novel, memoir, poem or interview, then do a writing or drawing prompt, and discuss their work. The group was made possible by Holland Bloorview's No Boundaries fund, a donor-supported grant that enables staff to bring projects that benefit children and families to life.Below is a parent's response to this writing prompt: Imagine that you've just received your child's diagnosis. Write a letter to your younger self, knowing what you know now, and share your best advice.A letter to myselfDon't be alone in this. Make sure you have someone to be your cohort, your side kick, the bad guy, the good guy, whatever it is that you need to balance yourself out.

Find the agencies that say they know the most about the disease, the syndrome, the symptoms and visit them, online, in writing, in person. They have seen it all. Don't wait for anyone to come to you.Always have a good paper trail and learn to file. File your contacts, every name, number and e-mail and put the paperwork in a file. There will be a day when you need to pick it all up in a hurry and start again.Remember yourself. Remember your relationship, why you became two, and then three or more. Allow yourself and your partner to grieve differently, to feel differently than each other about the diagnosis and the outcome.Do the research, try the therapies, but be realistic. Get to know the researchers, the scientists, the people behind the doctors. They want to make it better and need to see the thing they treat, to name it and see it. Spend real time with your other children. They will not be okay. You can not be normal, their life with you will not be normal, sharing your grief and tears with them is not always caring, it can be scarring.When people say respite, take it, do it. Your child will have more people looking after them that sleep longer than you do, work less hours than you do.If you think therapy is worth it, go do it, find the money, go with your gut, even if it does not fit with your partner's gut. There is nothing worse than getting to a point when you wish you could go back.And always look after yourself as best as you can. Before you put others first, oxygen mask on you, then the next person.Try and keep up whatever it was (before kids) that made you delightedly happy, even if you only do it once a year. Try not to do it alone.

Tuesday, December 12, 2017

I read R. J. Palacio’s book Wonder—about a boy called Auggie with a craniofacial condition that elicits stares and fear—back in 2012.

In an e-mail to the author on June 29 that year, I wrote: “I loved the book. In particular, I felt the recognition by Via (Auggie’s sister) of the two ways of seeing Auggie—the one of wholeness and beauty she saw in her mind’s eye vs. the picture of horrifying defects others saw, which she eventually gets a glimpse of—was very credible and real.”I also wrote about the one part of the book that disappointed me. It happened on page 277, when Auggie’s mom refers to some Grade 7 bullies as “morons” and “imbeciles” and “cretinos.”

Reading that paragraph stopped me in my tracks. It hurt my head.

Why, in a book about accepting differences, would the respected and loving mother figure use labels for people with mental disabilities as put-downs?

Palacio responded on July 14, and apologized. “Please keep in mind that she was referring to the bullies who targeted her son, not kids with developmental challenges,” she wrote.

And yet, we know that slurs are cutting precisely because of their origins.

I don’t use the word “lame.” Decades ago, people would have used the term to describe the lop-sided gait of my son. I realize that people today mean “useless” in a generic sense when they say it. But the word’s origins made people who walk differently feel “other” and “abnormal.” That's where the word got its power and punch.

I’ve heard many parents say they read the book Wonder with their kids, and I’ve always questioned what they said when they got to that part on page 277 about the morons, imbeciles and cretinos. Did they just read over it? Did they talk about why those words negate the main message of the book?

It would be like the mom referring to a bully as a cripple, or using a racial epithet.

I haven’t seen the movie Wonder. I know parents of kids with and without disabilities love it. I know it has beautiful messages about inclusion and kindness. I'm sure it's sparking important discussions about difference.

However, when I heard that the boy playing Auggie would spend two hours a day in makeup and prosthetics to approximate the face of a child with Treacher Collins syndrome—the condition Palacio based the book on—it lost its appeal.When my son was a baby, I got involved with AboutFace in Toronto. They support kids with facial differences like Auggie’s, and their families. The variety of disorders that can affect the face, skull and neck is huge. According to a similar group in the U.S.—FACES—one in every 650 children is born with a craniofacial condition. Surely with those numbers, and with the resources behind Lionsgate Films, a boy with some kind of facial difference could have been cast to play Auggie.

According to this piece in the Daily Mail, Wonder's author Palacio “lobbied hard to have a child with Treacher Collins syndrome star in the film.”The producers did fly in a boy called Nathaniel (with an undisclosed facial difference) for a screen test, the Daily Mail reported. But, as Palacio said in the piece: “Nathaniel had physical limitations, he was hard to understand, and if you have a $20-million movie, you have to make that call.”

Isn’t that the same argument that’s made every time someone gets turned down for a job because of their disability? It would just be too hard to adapt.

If producers were concerned about the child’s speech intelligibility, they could have used captions on theatre screens (what a great way to raise awareness about accessibility?). By the end of the movie, viewers probably would have gotten the hang of it.Lionsgate uses this tagline for the film: Who gives you the courage to face the world?

In my view, the producers lacked the courage to turn the movie Wonder into the real deal by casting a boy living with a facial difference. It didn't have to be Treacher Collins. But it had to be a real facial difference.

Here’s how a couple of adults with craniofacial disorders and a parent wrote about the casting decision.

“It was devastating to realize that the directors involved with Wonder would rather cast a healthy, 'normal' looking child and put him in makeup and prosthetics, rather than cast someone who looked like me,” wrote Ariel Henley, who has Crouzon syndrome, in Teen Vogue. “I’ve gone my entire life without ever seeing someone with life experiences similar to my own represented on the big screen.”

Mike, who identifies as disfigured, and who I follow on Twitter @guysmiley22 tweeted: “It really, really, really makes me upset to see Jacob Tremblay in that mask. Like our disfigurements are a costume…As if disfigured people don’t exist.”

Sue Robins, a parent who has worked in family engagement in children’s rehab, likened the casting to hiring a regular child to play a child with Down syndrome, then putting them in intensive makeup to mimic the facial features associated with the condition.

There are plenty of child and adult actors with Down syndrome.

Doesn't imagining a child actor wearing a Down syndrome “mask” convey the absurdity of the Wonder casting choice?”There’s no reason a child with a craniofacial condition couldn’t have played Auggie in Wonder. That should have been a non-negotiable.

Because authenticity, and words, matter.Below is a photo of Simon Moore and his daughter Alice, who both have Treacher Collins syndrome. The British family was interviewed in the Daily Mail in 2015. The photo is by James Linsell-Clark.

Thursday, December 7, 2017

Mothers of children with autism reported significant drops in depression and stress and improvements in physical health after participating in acceptance and commitment therapy (ACT), according to a study published in the journal Mindfulness today.

Twenty-nine Toronto mothers filled out questionnaires before and after the workshops where they learned to accept—rather than avoid—difficult parenting emotions, think more flexibly and commit to their values. The falls in depression and stress and gains in physical health seen four weeks after the first two parts of a three-session workshop were maintained at a follow-up eight weeks after the program ended.The mothers had children with autism aged three to 22, and one-third had more than one child with autism.

More than a decade of research shows parents of kids with disabilities like autism have higher rates of stress and depression and more physical problems than other parents. But few studies have looked at interventions to help parents.The new study was conducted by clinicians and parents from the Centre for Addiction and Mental Health, University Health Network, Surrey Place and Extend-A-Family.The team concludes that ACT may be effective in improving mental and physical health in mothers of children with autism.

The groups were facilitated by one father and two mothers of children with autism who were trained to lead the intervention. BLOOM interviewed Lee Steel, who ran the groups with Kelly Bryce and Dr. Kenneth Fung.

BLOOM: What is ACT?

Lee Steel: It’s different from anything I’ve ever done, and I’ve been doing workshops for 22 years. Usually the focus is to get you to be a better parent by giving you another skill set. But ACT puts the focus on me, as a parent, and my own wellbeing. It’s about caring for the caregiver. It gives me a set of tools to go home and help me look after myself better.

At the core is the idea of psychological flexibility—so that as parents, you create a small gap between reacting and thinking about something in a more flexible way.

My son Eric is 26 now. I was feeling quite exhausted from years of advocacy. I was burning out, and reacting in ways I didn’t want to. ACT’s idea of putting the oxygen mask on myself first—rather than my child—was really applicable to me.

BLOOM: The paper lists one of the principles as acceptance.

Lee Steel: Yes, this is about being able to hold the emotions we’re feeling—including painful emotions—instead of avoiding them, pushing them down or saying ‘I shouldn’t feel this way.” It’s about holding everything with compassion. It’s accepting the way that I am, and the way that I’m feeling.

Sometimes it may be holding two emotions at the same time. Perhaps I want Eric to be independent and accepted and appreciated, but I feel really sad that it’s so hard to find services in the adult world, and to find employment that builds on his strengths.

So I simultaneously desire his independence and hold the thought that it doesn’t come easily, and I’m really sad about that. I don’t run away from those painful feelings.

I don’t do what I did when he was younger—which is to tell myself ‘I just need to apply myself more, work harder, make more calls, do more.’”

BLOOM: I can certainly relate to that feeling that somehow I can never do enough. That the world is telling me that my child is not enough, and that I’m not enough.

Lee Steel: The idea of acceptance is not only about my thoughts and emotions. It’s also about accepting my child the way he or she is. I don’t know what it’s like with other disabilities, but in the autism community, you can get a mixed message that if you work really, really hard, you can change the outcome of your child’s life. That’s an incredible burden.

I have grief now about how I can’t get all of those earlier years with my son back. Instead of slowing down and enjoying the moment, my focus then was on doing more and more and more, and working harder and harder and harder.

BLOOM: I think those ideas of ‘fixing’ disability run through our culture, which is very focused on self-improvement.

Lee Steel: Parents get into comparing their child to this fantasy outcome that isn’t even real. And that negates who my child is and who I am. ACT gets you to look at 'Whose value is this?' It may be a value that's really strong in our culture, but would this be my value?

In ACT, we ask ‘Are we treating ourselves as a problem to be solved, or as a process to be lived and appreciated?’ One slide we show asks ‘Are we a math equation or are we a sunset?”BLOOM: Another part of ACT is called cognitive defusion.

Lee Steel: That involves separating ourselves from our thoughts. I know in my experience as a parent, I often made a thought into a fact. In ACT, we learn techniques to help us hold our thoughts more lightly, instead of holding them as the truth.

ACT encourages us to see ourselves as an observer of our experience. The way Dr. Fung explains it is he holds one hand open, palm up, and puts the other hand inside of it. ‘We’re the holder, we’re not the content,’ he says. ‘Our experiences can come and go and change, but we’re the flexible holding self, rather than fusing with the contents.’

So instead of beating myself up because I wasn’t as patient as I would have liked, I can say: ‘Okay, I'm having that thought again. I’m tired. What do I need? Maybe I can go to bed earlier. Maybe I need to have a walk. Instead of judging and hurting myself more, I can be kind and compassionate with myself. If I’m compassionate with myself, that will ripple through to my child and to seeing everyone as doing the best they can.

Before ACT, when I was so hard on myself, it just made me more brittle towards other people.

BLOOM: I love that idea of being the container of our thoughts, not the thoughts themselves. How do values factor into this therapy?

Lee Steel: We do an exercise where each parent chooses four values that are important to them. Then they look at their values to see whether their actions are aligned with them. As a parent, this helped me reflect on aspects of my life that I’ve put on a shelf or forgotten about.

For example, let’s say one of my values is self-care. But I’m not doing anything about that. I’m putting everyone else first, I’m not getting enough sleep and I’m not eating right. ACT invites us to think of an action that would move us closer to that value.

We think of a value as being like a north star that can direct you. It’s not about goal setting. It’s about reflecting and asking, ‘If these are my values, are my actions moving me towards them, or away from them?’BLOOM: Why was it important to have parents of children with autism lead the workshops?

Lee Steel: It gave us a 'short-hand' early on. We didn’t have to create safety because parents knew that I got what they were talking about. You’re not talking about a script, you live it, too.

BLOOM: It's an instant credibility. The study is about parents of children with autism, but I imagine parents of kids with any kind of disability could benefit?

Lee Steel: Yes, the overlapping struggles are the same, no matter what the diagnosis. The last group we did was a mixture of parents with children with different disabilities. My hope is that this work can influence parents at a much younger age than me. I wish I’d had it much earlier on.

To learn more about acceptance and commitment therapy, watch this excellent video or contact Dr. Yona Lunsky at Yona.Lunsky@camh.ca.

Monday, December 4, 2017

Barbara Chyette holds a photo of her brother Lauren Braun, who choked to death on a hamburger on a supervised group home outing in 2014. He had no teeth and was unable to eat regular food unless it was cut into tiny pieces. Photo by John J. Kim/Chicago Tribune

By Louise Kinross'Suffering in Secret,' a Chicago Tribune investigation into the abuse and neglect of disabled adults in 3,000 state-licensed group homes in Illinois, won first prize in the 2017 Katherine Schneider Journalism Award for Excellence in Reporting on Disability.The international contest, by the National Center on Disability and Journalism at Arizona State University, is dedicated to recognizing excellence in covering disability issues.Tribune reporters Michael J. Berens and Patricia Callahan identified over 1,300 cases of documented harm since 2011 in Illinois group homes, or their day programs, for adults with intellectual and developmental disabilities.

At least 42 deaths were linked to abuse or neglect. People who were only able to eat food that was pureed or cut into tiny pieces choked to death on regular food—including a hamburger and a marshmallow. Others died from untreated bed sores and undiagnosed illnesses. One resident, accused of stealing cookies, was beaten to death by a caregiver.Berens and Callahan found a wide range of mistreatment: residents were mocked and intentionally provoked, bound with duct tape, barricaded in rooms, left in soiled clothing and denied food. They also looked at resident-on-resident assaults, in particular in homes where people with severe physical disabilities were mixed with those with histories of violence. Illinois officials told the reporters that the addresses of the 3,000 group homes, which house up to eight residents each, are secret, as are records of abuse or neglect causing death. The reporters filed more than 100 public records requests, but state files were so heavily redacted and unreliable they had to dig up information elsewhere.Caregivers, often unlicensed and untrained, earn an average of US$9.35 an hour, the investigation noted. Ironically, the reporters found the state saves US$135,000 a year when it places a person in a group home, instead of an institution. Illinois' group homes are not bound by staffing standards and other rules regulating nursing homes.Berens and Callahan are to be commended for shining a light on the personal stories of the victims and their families.They talk about their work in this fascinating panel.

Friday, December 1, 2017

The following is a found poem created this week in the narrative medicine group for parents at Holland Bloorview. A found poem is like a collage, but in this case brings together a line of writing each parent wrote in response to the prompt: "I feel joy when my child ..." In the six-week narrative group, parents write and draw about their emotional reactions to parenting children with disabilities as a way to build self-empathy, resilience and peer support. The group is made possible by the hospital's No Boundaries fund, a donor-supported grant that enables staff to bring projects that benefit clients and families to life.

I feel joy

I feel joy when my child turns towards me, lifting her eyebrows and curling her lips upwards to show me her teeth, as if she is to cry helplessly with laughter,

I feel joy when my child is happy, smiling, accepted and not judged by the society,

I feel joy when my child sings too loudly and laughs,

I feel joy when my child is happy, successful and contented, and has achieved what she aimed for,

There’s this adorable image of a toddler who appears healthy, but who, we learn, has cystic fibrosis (CF). CF is a progressive genetic disease that causes damage to the lungs and digestive system. It shortens life, although some people with the condition are living into their '40s and '50s.

His mother, Jen Gann, says she chose to have prenatal genetic testing while pregnant because “if something were wrong,” she would abort.

Due to human error, Gann never received the results, which showed she was a carrier for the CF genetic mutation. That meant her husband wasn’t advised to get tested. He also is a carrier. They found out their son Dudley has cystic fibrosis when he was a few weeks’ old.

The rest of the piece is about the intense guilt Gann experiences and her decision to sue her health providers in a case of wrongful birth.

I feel empathy for Gann. Every mother hopes she will be lucky enough to give her newborn child a clean slate at life.

Perhaps where we differ is that I don't view my child's health as an entitlement guaranteed through science. I have a son with a rare genetic condition. After he was born, I stopped counting the number of doctors who said: “But he had a normal amnio!”

Gann's piece is problematic for me in a couple of ways.

At one point she envisions telling her older son: “I’m sorry I didn’t save you, from your own life.”

Oddly, we don’t hear from any adults with cystic fibrosis in Gann’s piece, people who could speak firsthand to the complexities of their lives. Will Dudley grow to wish he were not alive? Does his opinion, when he’s able to render it, matter?

Instead, we read about a conversation Gann had with Dortha Jacobs. Jacobs established the legal concept of wrongful birth in 1975, when she sued her doctor for not diagnosing her rubella when she was pregnant with her daughter Lesli. As a result, Lesli was born with severe disabilities.

This is where I felt an editor should have applied the brakes.

Lesli isn’t offered any agency in the piece. Gann says Lesli lives in supported housing, can’t see, hear, talk or walk, has intellectual disabilities and has had over 20 surgeries. “It’s a life sentence,” is how her mother Jacobs describes her parenting experience.

I empathize with the challenges experienced by Jacobs and her daughter, and the struggles Gann anticipates with her son. But nothing about disability, or illness in the case of CF, is ever black or white.

We aren't told about how Lesli communicates. Why do we not hear from this marginalized person, or from other people with disabilities?

Gann says if she’d gotten her test results, she could have chosen to get pregnant using IVF to ensure a healthy embryo. She then asks: “Would I still have made Dudley, this exact son, only without his disease?”

Well, uh, no. Her son Dudley was the son that she would have terminated, prior to trying again with IVF. Another child would have been another child.

And that’s the sticking point, isn’t it? When a child is born with a disability or chronic health condition, it’s part of their identity. It doesn’t sit, like an inert blob, separate from the human being. It’s a part of all of their experiences, good and bad, part of the way they see the world and interact with it.

Jacobs says she’d like to replace the term “wrongful birth” with something like “parental choice.”

What about choice in how we live our lives with our children, in the here and now?

Today I listened to Keith McArthur's podcast with Fabiana Bacchini, author of From Surviving to Thriving. McArthur, who writes The Instruction Manual, is dad to a son with a rare genetic condition. Bacchini struggled with infertility, then got pregnant with twins. One child died in utero, and the other was born severely premature, with many complications, and later diagnosed with cerebral palsy.

This line from Bacchini stuck out: “You have to be making a choice everyday, a conscious choice, that this is a good journey, despite the hardness and sadness and the unknown.”

Friday, November 24, 2017

Youth who help care for a disabled or ill brother or sister were in the spotlight this week at the Young Carers Forum in Toronto, organized by The Change Foundation, an Ontario health think tank.

Alyssa Van Wynen, 21, centre above, spoke to CBC about her experience supporting her older sister Tiffany, left, who suffered a traumatic brain injury in a car accident. “With my sister, she lost out on a lot of stuff, so there’s that huge guilt factor, too,” she says in this eye-opening interview. “Because I am younger than her, I’m getting all these opportunities and stuff that she didn’t have the chance to experience.”

The Change Foundation says as many as one-third of people between the ages of 15 to 24 in Ontario act as caregivers to a family member. You can watch some of their stories here.

The London, U.K. travel company Accomable, for people who need accessibility, has been bought by Air BnB. That should mean more and better accessibility features in Air BnB listings.

Two new books caught my eye today. The first is Academic Ableism: Disability and Higher Education. That’s it, I thought! Academic ableism. That’s the concept I’ve been trying to articulate. How the culture of academia excludes people with disabilities, especially intellectual disabilities.

Here’s a short passage: “Disability has always been construed as the inverse or opposite of higher education. Or, let me put it differently: higher education has needed to create a series of versions of 'lower education' to justify its work and to ground its exceptionalism, and the physical gates and steps that we find on campuses trace a long history of exclusion.”

The book looks at how universities have helped define, study and devalue disability, but never recognized disability as a source of knowledge.

University of Michigan Press describes it thus: “The ethic of higher education encourages students and teachers alike to accentuate ability, valorize perfection, and stigmatize anything that hints at intellectual, mental, or physical weakness, even as we gesture toward the value of diversity and innovation.” Author Jay Dolmage is associate professor of English at the University of Waterloo.

Author Rebecca Fish writes: “This book is an ethnography of locked wards for women with learning disabilities. It represents just a small part of my life the year of my fieldwork...These women had been removed, sometimes a great distance, from their families and friends, and compelled to lead a restricted life under surveillance and control.” Rebecca is a researcher with the Centre for Disability Research at the University of Lancaster in the U.K.

Thursday, November 23, 2017

Koolway co-founders Jennifer Gallienne and John Cook with head cutter, sewer and pattern designer Vienna Liu.

By Louise Kinross

Jennifer Gallienne is co-founder of Koolway Sports, a premium Canadian line of coats, capes, boots and mitts designed for children and adults who use wheelchairs.

“Our outerwear is for people in wheelchairs who want to go out and enjoy life and be warm, comfortable and dry,” Jennifer says. “The reason people come to us is they can't find anything off the rack that has zippers in the sleeves—to make it easy to put on and take off—a half back for comfort, shoulder openings for chair straps, and little g-tube openings. “We work with every body shape. We work with children who use traches, and can't have fleece in the top of their coat. In one of our focus groups, a woman said that while she was running, the blanket she had on her child in the stroller kept falling off. I sat on the floor with her and drew a picture of a blanket with a zipper, like a bunting bag, and said 'Is this what you want?' That's how our product is developed—through parents, or the person in the chair, telling us what they need and want.”

Jennifer runs Koolway out of a home studio in Whitby, where she works with a team of professional industrial sewers who make the coats. “We're paying top wages and buying top-of-the line fabrics and notions from Toronto, Montreal, Calgary and Colorado. We make quality coats that last 10 years.”

Koolways sells its products worldwide, with about 75 per cent of orders coming through its website, says co-founder John Cook, who is also president. Before taking an order, Koolway asks customers to watch a video on how to take six key measurements, then confirms sizing on Skype or Facetime, so that they can see the customer’s wheelchair and make recommendations. They also do in-home fittings or group fittings at schools, Holland Bloorview, Variety Village and Whitby Ability Centre.

The adaptations in the coat are designed to reduce dressing time from 20 minutes to two minutes, John says. “For parents and school caregivers, that frees up a lot of time.” The company's most popular product is its winter coat with a detachable front and back blanket. It costs $510 to $760, based on features.

“Our main challenge is the lack of government grants for families who can't afford them,” says John. “If a family doesn't have the resources, we'll try to work with them. We'll contact third parties. Variety International recently authorized our product in some regions as eligible for funding. Sometimes we may have a family within our circle whose child has outgrown their coat, and they may ‘angel gift’ it to another family. We've reached out to Easter Seals, but they raise funds for other items.”

Koolway is partnering with parent-run foundations Three To Be and Peaceful Hearts Georgina, as well as Ability Online, to “matchmake” families who can benefit from a gently-used coat, Jennifer says. “If only people realized that a coat is a necessity.”

Jennifer began Koolway after losing her job as a graphic designer at age 40.

Like the “connector” personality described in Malcolm Gladwell's book The Tipping Point, Jennifer had a knack for knowing people, and using these connections to develop her business idea.

Jennifer's cousin was a seamstress. A parent had asked her to custom-make a coat for her son who used a wheelchair. “I knew dressing was a struggle for people with disabilities, and I said let's go into business,” Jennifer recalls.

As a graphic artist in Toronto, Jennifer had worked in the Fashion District in Toronto. “I used to sit on the street car with Agnus, who was a pattern maker for a high-end designer in my building. I picked up the phone and called Agnus to see if she would design some patterns for us. Do you remember those bug shirts that are made for people who go into the woods at their cottages? I called up the bug shirt man and picked his brain about where he manufactured his products in Toronto. I had to learn everything by trial and error and I did that, picking up the phone and asking people.”

One of the people Jennifer called was John, a neighbour who’d volunteered with Special Olympics when he worked in insurance in Calgary. “It was a Wednesday night and I was watching Dragon’s Den and I got a phone call from Jennifer saying ‘I’ve got a business, would you like to see what we’re doing?” John says. “They needed a friendly dragon and that was me.”

Recently, Koolway reached an agreement with George Brown College’s Fashion Exchange Program to have students help them plot, grade and digitize a cape, so that it eliminates cardboard patterns. “I had no idea this Fashion Exchange existed,” Jennifer says, “then I heard Matt Galloway on CBC’s Metro Morning interview the director.” The program trains students to be industrial power sewers, and includes refugees who were skilled sewers from other countries and need to learn Canadian standards. Koolway has placed an order for over 100 capes.

Jennifer describes the business as a labour of love. “We’re the custom tailor for people who use wheelchairs around the world,” John says.

Greater self-compassion was related to less stress and depression in parents of adults with developmental disabilities, according to a study in the Journal of Applied Research in Intellectual Disabilities.

The findings are based on self-report measures of 56 Toronto parents who attended one of two six-week groups as their children waited for services after leaving high school. One was a mindfulness group where they were taught to pay attention to their feelings and thoughts in an accepting, non-judgmental way. The other was a group providing information and support on getting services, many of which are wait-listed. One-quarter of the adult children didn't have anything to do weekdays.

The paper defines self-compassion as “being touched by and open to one’s own suffering, not avoiding or disconnecting from it,” and “generating the desire to alleviate one’s suffering and to heal oneself with kindness.”

The two parent groups didn’t focus specifically on self-compassion, but the mindfulness group included learning how to do a loving kindness meditation that begins with a focus on the self.

The current study found self-compassion was negatively correlated with depression and stress—even after controlling for parents’ perceived caregiving burden; for parents of children with autism, who sometimes have more stress and depression than parents of children with other developmental disabilities; and for neighbourhood income.

“Self-compassion is something that matters and that we need to pay more attention to,” says investigator Dr. Yona Lunsky, a senior scientist at CAMH who partnered with Developmental Services Ontario and Community Living Toronto to run the groups. “Parents are very compassionate when it comes to their own kids, but do they have that same compassion for themselves?

“Often, these parents feel inadequate. Why do they feel inadequate? Because of all of the things they’re supposed to be doing to make sure their child is okay. Sometimes those things work, and sometimes they don’t, and sometimes that’s hard on parents. They may experience inner psychic pain, or the pain of the child or spouse or other siblings.”

Parents’ first reaction may be to dismiss that discomfort. “We don’t have time and we’re scared to look at what’s going on in ourselves—that we are suffering. We think ‘If I’m going to be strong, I won’t pay attention to that, and I’ll keep going.’ But if we’re disconnecting and pretending it’s not there, we’ll never relieve that suffering, and our approach will eventually be harmful.”

Yona likens it to an athlete who continues running on an injured knee. “You have to notice what’s going on when you’re in pain, so you can treat it with gentleness and love and care.”

Parents often feel an automatic sense of compassion for their child, but don’t extend the same kindness to themselves. “Maybe instead of berating yourself because you did something wrong, you can forgive yourself, or notice how you’re experiencing it, or just be gentle. It’s about gentleness.”

Yona notes that there’s a body of literature on self-compassion in the general population, but work looking at its role in parenting children with disabilities is early and emerging.

“We had a sense of self-compassion's importance for parents from past research, but this is the first study to demonstrate its association with mental health for parents of adults with developmental disabilities," says Suzanne Robinson, a graduate student at York University who was lead author and analyzed the data for the study. Suzanne is doing her PhD in clinical developmental psychology and worked as a summer research student at Holland Bloorview in 2010.

Yona says future research could look at understanding why some parents of children with disabilities are more self-compassionate than others, and how to foster self-compassion in this population.

Friday, November 10, 2017

Catherine and Trish Emmons and daughter Priscilla, 3, are the focus of our new A Family Like Mine video.Priscilla, known as Cilla, was born dependent on drugs to a mother who couldn't care for her. She spent her first month in the neonatal intensive care unit in pain, on morphine, inconsolable. At nine months, Trish and Catherine adopted her."When we first brought her home, we noticed that she would have huge temper tantrums when we would leave her," Catherine recalls. "And I don't mean by leaving the house. I mean she would be in the living room and we'd get up to get a cup of coffee and she would start having a temper tantrum because she was so distraught that you were going to leave her. Because a lot of people don't realize that kids, babies, suffer loss. They think 'Oh, they don't remember.' But at that point she'd already suffered from two major losses. One from her birth mom, and one from her foster mom."This is a remarkable family with great insights on parenting, adoption and celebrating differences. Thank you to social worker Barb Germon for suggesting them.A Family Like Mine is a video series about diverse families raising children with disabilities. It's incorporated into the curriculum for second and third year medical students at the University of Toronto.

Monday, November 6, 2017

Many of you know Sue Robins as the author behind The invisible mom, one of our most read posts about social isolation among families of children with disabilities. Sue recently took a poetry class and wrote this piece, which she says is fiction, based on her experiences raising her son with Down syndrome, and stories other families like hers have shared with her. Louise

Thursday, November 2, 2017

Karen Bojti wrote: “Another ‘out of the box’ person I have discovered is Laura Nadine. You can Google her. She’s a professional violinist, a wandering minstrel and music teacher. She is also a woman on the autism spectrum. She is teaching Charlie to play the violin.”

I hopped over to Enlightened Audio, which is Laura’s website, and this sentence jumped out at me: “I teach music to all humans.”

It sounds like common sense, but it’s revolutionary. Many children with disabilities struggle to find a music program they can attend, let alone flourish in.

Laura lives in Buffalo, but she travels to Toronto on weekends to teach here, so she came to visit me.

Laura primarily teaches string instruments, but she also teaches piano and guitar at a beginner level.

“The key ingredient to my teaching approach is presuming competence,” Laura says. “I truly believe every student can learn. We just may need to adjust the method or the way in which the student connects with me. I want to make it clear that I’m not a music therapist. I’m teaching children to acquire the skill of playing the instrument, and when they’re finished, these students are playing core material like everyone else.”

Laura says about 80 per cent of her students have disabilities. Most have autism, but she’s also worked with children with cerebral palsy, Down syndrome and ADHD.

“One of the things I think is flawed in understanding disability is that we think disability is static: when you’re assigned a certain IQ, that’s what it is. We don’t take into consideration the error of the measurement systems, and that kids are fluid. They can grow and learn more. I’ve seen this time and time again with autistic children going from being non-verbal to communicating with a letter board. We’ve got testing models that assume all humans fit into a static model. We really don’t understand the grey area of the spectrum, and the ability to make new [neural] connections to compensate for places where there might be flaws.”

When working with a new student, Laura encourages them to make a sound with the violin. “Their bow hold might not be perfect, but making a sound is rewarding,” she says. “I let the child take the lead. If the child is afraid to touch the instrument, we unpack it and look at it, and I talk about how it only makes sound when the child wants it to make sound.”

For a child with autism who has trouble getting her body to do what her brain wants, she'll take the child’s arm and help her bow up and down.

For some children with autism, touching the violin to their shoulder and resting a chin on it “can feel like lightning shocks going through the body,” Laura says. “The goal is to get it on their shoulder as soon as possible, so they can train their own body to tolerate the input. However, if I have to hold the violin first to get to that step, then I do that. I would face the student and say ‘I know your brain understands what you need to do, but your body needs time to learn.’”

The good news is that “the body and brain have an amazing ability to increase tolerance to input, so people on the spectrum can learn to be a little less sensitive through training and understanding. The more times we do something, the less intense those shocks will feel, until they can independently hold the instrument.”

Laura struggled in school growing up because her autism wasn’t diagnosed. “The hardest thing for me is my nervous system,” she says. “I went to public school in the states, and they had no windows in the classroom and fluorescent, vibrating lights. It was hard to be in this building with all this input. There were bells ringing and kids chewing on pencils. I could even hear the clocks tick and the water fountain pump turn on. I had meltdowns that weren’t physical—where I would shut down and couldn’t speak. It manifested in night terrors. My teachers thought I was sick. I dropped out of high school in Grade 10 and did correspondence school.”

Laura says that during her struggles at school, “music was my island of increased ability.” Within four years she was playing at a professional level, and was asked to tutor other music students after school.

Laura says she may have synesthesia, where “one sense gets confused with another. In my case, my vision has a sound. What I see creates music in my head. When I was in music class at school, I would pick up snippets of sounds throughout the day, then organize them into a song to play on my violin. It was an outlet for stress. I called these songs shadow songs, and one of the first I wrote was called All Alone. I wrote it at age 14. I call them shadow songs because everything has a shadow, but for me, everything has a song.”

It wasn’t until Laura was 27 that she learned she had autism. “My second child Jacob was doing some odd things that reminded me of myself,” she recalls. “He had to have things organized in a very special way, and he wasn’t speaking fully until right before he went to kindergarten. I took him to the doctor and he gave us the diagnosis of autism spectrum disorder. Then, while talking to me about Jacob, he handed me some literature about adults on the spectrum. I guess I was obvious.”

Laura says getting the diagnosis was freeing. “It was like someone wiped the fog off my vision. The diagnosis is a toolbox, not a label. It told me what set of tools I needed to adapt to succeed in the world, not just survive. Nobody wants to just survive. People want to have a quality of life and I knew I wanted to be more.”

She went to college to study psychology and education. “With a diagnosis, I was able to ask for help with note-takers and extended time on tests, and I went from being a failing student to having a high GPA.” Laura says she wanted to understand better how her mind worked. “I felt many of the interventions for autism were obedience-based, not development-based, and I wanted to understand more so I could do more.”

Laura says what she’s learned from her students is that “there’s always a way, even when it feels like we’re pressed up against a wall and not making any progress. I’ll wait for the student to shine a light on something else that ends up working for us. That’s part of being student-led. I’m not trying to fix the student. I’m teaching them to navigate through their disability.”

Laura receives lots of positive feedback from her students and their teachers. “One girl who uses a letter board told me that music changed her life, and was a new way for her to communicate her inner thoughts.”

Laura hopes to move to Toronto in the New Year and become a Canadian citizen. “When I came to Toronto, it was the first time ever that I felt like I was at home. The community here is so warm and embraces unique perspectives. I can’t wait to be a part of that society on a daily basis.”Laura has a book: I am Snamuh: My Journey with Autism and the Power it Gave Me. She also has a few signed copies for anyone interested.

Tuesday, October 31, 2017

Fahima Afroze is a biomedical engineer with three daughters. Myreen, 11, has autism and Zafreen, 8, has cerebral palsy.

When Farzeen, now 4, was hospitalized at six months old, Fahima knew her way around the health system.

“They thought Farzeen had a bone infection, but she kept getting other infections,” Fahima recalls. “She caught hand, foot and mouth disease, and had yeast infections in her tongue. They brushed it off and said ‘she’s a kid,’ but my other kids weren’t that susceptible. I kept asking if we could call someone to look at her immune system, and they looked at me like I was the ‘crazy mom.’ One day a doctor left her medical record in the room by mistake, and I read it. I saw her neutrophils dipping to a dangerous level. Neutrophils are a component of the white blood cells. Without them, you have a suppressed immune system. When I showed the doctor, his eyes widened and he paged hematology and the cancer clinic. They gave us the diagnosis of Neutropenia, which is the body’s inability to make neutrophils. I knew something was wrong with her immune system! I had a maternal instinct about my child, and I was collaborating. But they were renowned specialists thinking ‘she can’t teach us our job.’ Trust your instincts. That's what I tell parents.”

With three daughters and three diagnoses, Fahima juggles over 300 medical appointments each year. “If they had the same thing, I could take them to the same appointments,” she says, but each child sees different specialists. Because she can never be certain about the length of visits, “I often have to drag the other two with us. Your sense of normalcy changes when you have a child with special needs. Our new normal is spending the whole day at hospital, or the whole day getting a leg casted.”

When she's not ferrying her children to doctors and therapists, Fahima is advocating for their inclusion.

One of her greatest frustrations is disability stigma. “It’s how people treat your special-needs child,” she says.

After her daughter Myreen spent a few years in a contained ‘community classroom,’ Fahima fought to have her educated in a regular class. “It’s the mindset at the school board that children who are differently abled don’t flourish in the regular class, and have to be segregated. They are very proud of their community classrooms.

“My whole philosophy is that there are no community classrooms in life. There is no community classroom in the workplace, in a place of worship or at an amusement park. We are expected to thrive in regular society. The school board is giving these students the mindset that they don’t deserve to be with socially ‘normal’ people. How do you impart social skills when you segregate students from society? Their peers are their best mentors.”

In the community class, Fahima says Myreen didn’t learn the regular curriculum. “They teach life skills, and it’s up to the teacher how she wants to teach life skills. My child was taught that the stop sign is an octagon for three years. Here’s a child who’s so bright, she knows all the polygons in the world.

“The community classrooms assume the students aren’t going anywhere. So while other students graduate with a diploma, they will graduate with a certificate. We’re closing doors on them before they’ve even tried life.”

All three girls are now in regular classrooms. “My kids have learned to manage in life,” Fahima says, yet they're socially isolated.

When Myreen joined a regular class, she “did well, getting lots of As and Bs. But she didn’t know how to handle the bullying,” Fahima says. “The other students put her up to do things, and she got in trouble. I proposed a buddy system, where an older student would support and mentor a younger student, and could be vigilant to prevent bullying. But the school didn’t do it. That would be going the extra mile.”

Fahima’s second daughter, Zafreen, is in Grade 3 on the ground floor of the same school. She wears leg and hand braces. Fahima is concerned about next year, when the Grade 4 classes move upstairs. She hopes the school will let Zafreen use the elevator. “Every time I ask for the littlest things, it’s like I asked for a kidney or money out of their own pockets, and the push back is crazy. I’m labeled as ‘that mom.’”

Fahima says it’s draining to advocate constantly. “How much can you preach and teach people along the way? I feel I’m doing this over and over again. Every year, I have to battle with a new set of teachers and reinvent the wheel.”

Because her children fall in a grey area, “they aren’t good enough for inclusion, but they’re too good for services,” she says.

Fahima pays for most of her girls’ therapy privately. “I have a new way of counting money,” she says. “I call it ‘therapy hours.’ If I see a $600 coat, I know that’s more than five hours of therapy, so I’m not buying that coat.”

Outside of school, her children tend to participate in adapted or special programs. “Even with camps, you have to choose the special-needs camps, because they will have the accommodations,” she says. “I can’t believe this is 2017 and I’m fighting for inclusion.”

Fahima recalls meeting a social worker who asked how she was coping with three children with chronic conditions. The social worker noted the increased risk of depression in parents who have only one child with disabilities. “I showed her my schedule of 300 plus appointments a year, and I told her I volunteer at places like Holland Bloorview. ‘I don’t have time to get depressed,’ I said.” Fahima laughs. “I guess I could pencil depression in on Tuesday, from 12 to 2.”

“I would be lying if I said it was easy. The hard work, the blood, the tears are too real. But, once you go past the grieving point, you have to hope for the better. You have to make the best of what’s handed to you.”

Volunteering keeps Fahima motivated and energized, she says. She co-founded the York Parent to Parent Support group, which helps parents advocate for their children at school and in the community. She also sits on Holland Bloorview’s Research Family Engagement Committee. “It’s a way for me to give back and a way for me to connect with people,” she says. “It’s not only my children whose social lives have suffered. When I’m volunteering, I don’t feel alone. I see other people in similar or even worse pain, and it’s a humbling experience. I get a reality check. I also like to share knowledge so that someone can learn from the lessons of my life. I hope that someone else may be able to bypass some of what I’ve experienced. And I feel supported when I hear other people’s stories. It’s not just me.”

Fahima recently spoke at a golf tournament by the Ontario Glass and Metal Association, which was dedicated to Holland Bloorview’s Family Support Fund. After talking about how her family has benefited from the fund, which supports equipment, recreation and respite, a participant offered to match the $3,000 that had already been raised. Most recently, she shared her story with Holland Bloorview research students.

Fahima became a family leader at Holland Bloorview even though her daughters are not clients. “We fall out of the catchment area because we live in Markham,” she says. “I’m allergic to the words ‘catchment area’ and ‘mandate.’ Every rejection letter I get has these words in it. We have nothing that compares to Holland Bloorview or SickKids where we are. Diseases don’t come by catchment area. It’s unbelievable that there would be such a difference in services just 40 miles from Toronto. I intend to speak to the CEO at Holland Bloorview about it, if I can.”

Fahima grew up in Iraq and Kuwait, and her family were refugees during the Gulf War. “When you’re a refugee, you’re not even treated as a human being,” she says. “You’re treated with no respect. You’re at the mercy of other people.” Eventually, the family was able to get a “flight from Jordan back home to Bangladesh.”

Fahima was studying engineering in Utah at the time of the 9/11 terrorist attacks. “I volunteered to speak about what it means to be Muslim, and that terrorism is not a religion,” she says. “No religion preaches to harm humanity. Instead, they preach unity, brotherhood and love for mankind. I wrote a paper called The Gulf War: Facts vs. Fiction and I got an A for it.”

Fahima came to Toronto 11 years ago. She is a Canadian citizen. Her oldest daughter Myreen hopes to be a surgeon and a pianist. She already has perfect pitch, her mom says. Zafreen wants to be a teacher. And Farzeen has her sights set on being a dancer. “We have the same dreams as any parent does,” Fahima says.Like this story? Sign up to receive our monthly BLOOM e-letter in your inbox.

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